“How To Live Well With Chronic Pain and Illness” Chapter 9 Summary: “Cultivating Kindness”

People will forget what you said, people will forget what you did, but people will never forget how you made them feel.

-Maya Angelou

This chapter is all about being kind. She says that kindness is a universal form of communication. We so often direct negative judgment toward ourselves. People with chronic illness (I’m speaking for all of us here, as an assumption,) definitely tend to do this. “Why does my body hate me?” “Why can’t I do things like I used to?” “I hate living this way.” etc etc etc.

But just imagine what it would feel like, if instead, we treated ourselves with the constant kindness that we so often show others. If we can be friendly to others, we should be friendly to ourselves as well.

She goes on to talk about how the mind is flexible and changeable. In order to get us all to start cultivating kindness, the author share in this chapter some of her favorite quotes on kindness:

“Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution.”
-Kahlil Gibran

When we extend kindness to someone else, it helps take us out of our own minds and away from being preoccupied with our own problems.

“Kindness is within our power even when fondness is not.”
-Samuel Johnson
This quote I think is even more relevant in today’s world. Where we may not all agree with one another, we can still be kind. Even though we may not find another person easy to get along with, we can still show compassion.

“I’ve always depended on the kindness of strangers.”
A Streetcar Named Desire
We with chronic illness can definitely relate to this one. We may find ourselves in situations where we have to rely on a stranger or acquaintance to help us if we are not feeling physically well enough to do something ourselves.

“No act of kindness, no matter how small, is ever wasted.”
-Aesop

Every. Drop. Counts.

The author ends the chapter with this powerful quote by Henry James:

Three things in human life are important: first is to be kind; the second is to be kind; and the third is to be kind.

 

“How To Live Well With Chronic Pain and Illness” Chapter 8 Summary: “The Many Benefits of Patience”

Chapter 8 of “How To Live Well With Chronic Pain and Illness” outlines the many benefits of patience when it comes to living a life with chronic pain and/or illness. We are patients. And we need to be patient. This word patient is such a commonly used word in our life’s dictionary.

Everyone loses their patience–maybe traffic is bad and you just want to get home; maybe the wait time at the doctor’s office is unbearable and you can’t stop glancing at the clock while sighing; maybe today just isn’t your day.

One hard truth about life: sometimes, it just doesn’t go your way. But the author puts this fact into perspective for us a bit in this chapter. She says that “it’s not the fact that we don’t get our way that makes us miserable; it’s how we respond to that fact. The question becomes, do we get angry and upset, or do we tolerate and accept whatever’s happening that we don’t like?”

The author notes that by practicing patience in her life, she has noticed two things:
1) being patient is a way of treating yourself with compassion
2) being patient gave rise to equanimity–the even-tempered, peaceful state of mind that accepts with kind understanding that our lives will not always conform to our preferences.

The author then outlines her four-step approach for working with stressful and painful emotions. See below:
1) Recognize it: Recognize that impatience has arisen
She goes on to talk about how we often tend to think that the environment around us should conform to our expectations (ex: no traffic jams, no long lines, etc.) ; we tend to think that people should conform to our expectations (ex:they should behave the way we think they should) **I am very guilty of this** ; our expectations are often unrealistic when it comes to mastering new skills ; our expectations are almost always unrealistic when it comes to what goes on in our minds.

She suggests trying to come up with specific examples from our own lives that we can fit under these categories, which in turn will help us recognize that we are responding with impatience.
2) Label it: Label impatience when it is present in your mind
Try investigating your emotions from an objective point of view. It’s easy to place judgement on ourselves for how we’re feeling, but that isn’t fair nor compassionate to ourselves.
3) Investigate it: Investigate how impatience feels in your mind and in your body
Try to pay attention to how you feel when you’re impatient–is your body relaxed or tensed, is your mind calm or anxious?
4)Let it be
“Calmly accept the presence of impatience knowing that, with time, conditions will change..and so will my mind”

It’s the peace of mind that comes with accepting, without aversion, that delays, difficulties, and annoyances will inevitably be among life’s experiences.

 

“How To Live Well With Chronic Pain and Illness” Chapter 7 Summary: “Dealing with Tough Choice after Tough Choice”

When you live with chronic illness or pain, you find yourself constantly trying to manage your health as our relationships with others as skillfully and as well as we can. Based  on our evaluations of how we are managing both of those parts of our lives, we have to make choices that will most be the most beneficial. This leads to tough choice after tough choice. Do we keep the plans we made or listen to your body and stay home? Do we let down our friends or our bodies?

Start where you are. Use what you have. Do what you can.

-Arthur Ashe

 

In this chapter, the author writes out some tough choices/questions that we have probably all found ourselves facing at some point during our lives with chronic illness/pain. See below:

  • “Do we talk openly about our health problems, or do we keep them private?”
    • This is a choice I find myself facing nearly every day. When I interact with strangers or with people whom I know I won’t be seeing often, I find myself wondering if I should even bother trying to explain my symptoms and health conditions. Sometimes I feel like I have to explain myself or the person/people I’m talking to will think I’m weird, or lazy, or boring, etc. But then other times, I feel like I shouldn’t have to explain to someone who may just be a temporary character in my story. The best thing we can do for ourselves in this dilemma, is read the situation and circumstance and do what we feel will be the most beneficial and compassionate for us–not for anyone else.
  • “Do we follow our doctor’s treatment plan, or do we try alternate therapies?”
    • This question frequents my mind much more often than I would like it to. So often I find myself going back and forth on whether I want to try a new treatment that my doctor has suggested. For years, none of the medicines I was being told to take worked. None of them. Countless pills and nothing to show for it. So I am skeptical. However, there are some treatments that my doctors have suggested that have proved to be beneficial and have provided me with even the littlest relief (any relief is a win). So I am hopeful.
  • “Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?”
    • I can not tell you how often I have asked myself this question. You can ask my family members and my boyfriend–they won’t be able to remember either because it’s a substantial number that keeps growing. I find myself so much more in tune with my body than most people. While this can be beneficial, it can be extremely tormenting. It is exhausting to waste so much emotional efforts focusing on every single ache, twinge, or pain that is felt in our bodies. Trust me–I do it every day. However, no one knows your body as well as you do. There have been times that I have gone to the ER over a symptom that ended up being nothing to worry about. However, there have also been times where I have brought up symptoms to doctors and it has helped get me steps closer to treatments that actually work for my body. All you can do, is listen to your body as carefully as you can. You are the expert on your body. You know it best.
  • “Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?”
    • This is a question that I often answer too quickly–and most of the time, my answer is to hide how much pain I am really feeling. The author said something in this paragraph that stuck with me real hard. She said “Health people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything ‘normal,’ they assume we’re 100% well.” I mean this is an every single day occurrence for me. I’ve lived through thousands of interactions where someone has said to me “oh you have a headache today? I’m so sorry.” Well…I actually have a headache every single day, it’s just some days they are worse and more painful than other days. It’s not their fault, I know. But it’s extremely difficult to always remind people of my constant pain. So, most days, I just hide how I’m feeling. People are not deliberately insensitive to our pain though. They just simply don’t know.

The author ends this chapter by talking about how physically and mentally exhausting it is for us to have to  continually “assess, evaluate, and choose a course of action while already struggling with chronic illness.” and she couldn’t be more accurate. Pay attention to your body and you will find the answers to your choices come much more easily.

“How To Live Well With Chronic Pain and Illness” Chapter 6 Summary: “Complaining Is a Recipe for Suffering”

When you live with a chronic illness or condition, you find that there is never a shortage of things to complain about. However, this chapter focuses on how to acknowledge those complaints and be mindful of those we have control over and those we do not.

The author in this chapter tells us to separate our complaints into three parts: (1) complaints involving circumstances over which we have no control; (2) complaints involving circumstances over which we might have some control; (3) complaints involving circumstances over which we have total control. She then writes about each separate part, which I will summarize below:

No Control

So many things in our life happen out of our control. While we can’t change what happens, we are able to change how we respond to those circumstances. Complaining about facts and situations that are true and out of our control only causes us additional and unnecessary suffering–which we do not need more of. The author then quoted the Thai Buddhist monk Ajahn Chah and I loved the quote:

If you let go a little, you will have a little peace. If you let got a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.

While I like this quote, it’s also easier said than done: letting go, that is. So when you find yourself just unable to let it go, instead, just let it be.

Partial Control

Some examples of complaints that are under our partial control were: friends who don’t call often, a complaining partner, and the presence of physical pain. She suggests looking for “skillful actions” that can help ease the stress that this complaint is causing. For example, finding new ways of communicating with your partner, looking for pain clinics and new doctors, and picking up the phone to call and reach out to your friend yourself.

Total Control

Total control is almost non-existent for people with chronic illness and pain, even sometimes for people without it as well. Out of the list of complaints that she gave as examples, she was unable to categorize any of them into the total control category.

 

I will leave you with this, my favorite words of hers from this chapter: “Complaining is a habit that clouds our ability to see that most of our complaints involve circumstances over which we have little or no control.”

Complaining is natural. I, for one, complain much more often that I should. I have an extremely hard time letting things go. It’s one of my biggest flaws. But more recently. I have acknowledged this within myself and have been actively trying to let things go and let things be, since I know I have very little or no control over the vast majority of things I tend to complain about.

 

 

“How To Live Well With Chronic Pain and Illness” Chapter 5 Summary: “When the ‘Want Monster’ Whispers in Your Ear

This chapter of the book “How to Live Well With Chronic Pain and Illness” is all about how sometimes we want something so badly that we let our happiness depend on it. For us “spoonies,” most of our wants are health related wants. Wanting a pain free day, wanting a cure, wanting to be able to be physically active, etc. The author describes the feeling of wanting something so badly that our happiness depends on it as the “Want Monster.”

When the “Want Monster” comes around, we convince ourselves that we will truly be happy once we get the thing we are so badly yearning for. For me, I often hear the “Want Monster” telling me that if I could back in time to when my chronic daily headaches weren’t a thing, then I would be happy again. That if I was healthy like my peers, then I would be fully happy. Here’s the problem with that outlook, though: I would still have my share of problems whether I’m healthy or not. Everyone has problems. Not everyone has health related problems, but everyone has them.

True happiness emerges from the acceptance that not everything in life will go our way. Happiness comes from us finding peace with the hand that we’ve been dealt.

I know that I would be happier in most situations if my chronic daily headaches and migraines disappeared forever, there’s no doubt about that. But, I know that I have found some truly great and happy times due to my health conditions. I’ve found amazing people and opportunities and have learned a lot about myself.

When the “Want Monster” tries to enter your life, push it away. Find peace with your life as it is currently, and then you will find a pure happiness.

“How To Live Well With Chronic Pain & Illness” Chapter 3 Summary: Asking For Help Can Be Your Gift To Others

“No one has ever become poor by giving”

-Anne Frank

This chapter discusses something I, personally, have always struggled with–asking others for help.

Too often I feel like a burden on other people when my headaches are especially bad. I don’t want to be an even bigger burden by asking for favors and assistance.

What we need to learn, as people with medical conditions, is that we cannot get through this journey of ours alone. We need assistance every once in a while and we have to learn that it’s OK to ask for help.

Toni Bernhard outlines a few steps that you can take in order to teach yourself how to ask for help and being ok with it at the same time:

  1. “Make a list of what you need help with.” For me, this is often tasks such as making me food, running out to get more meds, bringing me a wet cloth for my head, cleaning up for me, etc. Tasks that normally I can handle on my own, but when my head is over a 7/10, I definitely need help completing. Toni makes a good point that we tend to think that our loved ones should just know what we need help with–that we shouldn’t have to ask and outline it. I have a few loved ones who will tell you I’m guilty of this one big time. Even with close family members and my significant other, I have to remind myself that they still may not know what exactly I need in a certain moment. What is helpful to me one time, may not be helpful to me in another time. They can’t read our minds and we shouldn’t expect them to.
  2. Match the tasks you need help with to your comfort level with them completing the task. Things like running errands are less intimate than perhaps staying with you in bed and helping calming your anxieties.
  3. Be direct–don’t be passive aggressive. Don’t beat around the bush, be direct when asking for what you need help with. People will appreciate that much more than trying to get them to offer to do the task without you asking.

 

In my experiences, my loved ones just want to help me feel better. Often, I’ve seen them get frustrated because they feel like they can’t do anything to help me. Little tasks that I can’t complete on my own when I’m feeling especially crappy, are ways to help them feel more helpful to me. They can’t cure me (I wish,) they can’t explain why my headaches happen (I wish,) and they can’t make my headaches any less than what they are (trust me, I wish.) But they can help me get through my day by lending a hand when and where I need it.

We as people with chronic illnesses and medical conditions live with daily physical challenges. It’s perfectly ok to ask for help and accept help offered to us to help us get through those challenges.

 

“How To Live Well With Chronic Pain & Illness” Educating Family & Friends On Your Condition/Illness

I’ve had a difficult time finding people and words out in the world who understand (or at least nearly understand) what I feel from day to day as someone who lives with a chronic invisible illness. I often scroll through blogs written by people with their own chronic illnesses and one day I came across a blog that talked about this book called “How To Live Well With Chronic Pain And Illness” by Toni Bernhard. The author of this blog wrote something about how this book has helped her cope and become more mindful in during her day to day life with a chronic illness. I decided to check it out. I bought a copy on Amazon and immediately dove in. Each page has something that strikes a chord with me. Each chapter provides new insight as well as much needed comfort and understanding. While the author of this book doesn’t live with the exact same illness that I do, she is able to connect with me so well because the emotions and situations that we face are nearly identical.

Each week, I will summarize a different chapter and provide the tips/advice/insight that I found most helpful. I hope you find this helpful, and then maybe even go purchase this book for yourself!

how-to-live-well

Chapter 1: Educating Family and Friends about Chronic Pain and Illness

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” – Alan Watts

It may take a while, longer than we want, for family and friends to adapt and adjust to our lives with chronic illness. I know from experience that the people who love you will try their damnedest to understand everything that you are feeling and going through. Of course, that’s not possible, since they aren’t going through it themselves. However, the effort is all that matters. It can bring about frustration for us when we feel like our loved ones really just don’t get it–but instead of getting frustrated with the ones who care for us, instead we should try to educate them on what exactly we are going through, to help them better understand and in turn better love and care for us how we need to be loved and cared for.

  • Share information from the internet or other sources
    • A quick Google search can bring about a number of organizations and associations that are devoted to your condition/illness and others like them. You could print a few pages, send links through emails, or just read through them with family and friends. You can let these people know that it’s important to you that they go through the information–don’t treat it like a test though–keep it lighthearted!
  • Communicate in writing
    • This is always effective for me–mostly because I cry every time I talk about something that is either very important to me or about something that has affected my life heavily. Actually, I just cry when I talk about a lot of things–I’m just a sensitive person and proud of it! So for me, I feel like it’s a lot easier to get out everything I want to share with someone through writing (clearly, since I have this blog.) When you write a letter or note to someone, make sure to use “I” more than you use “you.” You could start by describing your day to day life with a chronic illness, explain to them how you have had to adjust your life because of it and just let them know how you truly wish you could be as active as you once were–because sometimes it’s hard for outsiders to understand that we just can’t do the things we once were able to. Toni made a good point in this chapter–she said you could write to them about how the way you will “feel on any given day is unpredictable.” This is so completely true for me, and I find myself reminding my friends and family of this as often as I can.
  • Work on accepting that some people you’re close to may never treat you the way you’d like them to
    • This is something I still struggle with, but I’ve become much more comfortable with over the years. Some people may not show an interest because they think that if we want to talk about it, we will bring it up. For me, I think this rings very true for a lot of the people in my life (just assuming) and I’m ok with that. It’s nothing wrong that they’re doing or feeling. One really important note that Toni says in this chapter regarding this point is: “Understanding that others have their own ‘demons’ can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.” We need to understand that everyone has something. We can’t take it personally when they may not always remember to ask us about ours.

I have an amazing support system built of family and friends that I hold near and dear to my heart. They all are understanding and accepting of me, no matter how I’m feeling or how my health changes. There are some people who I have accepted may never be as understanding as the next, but all that matters is that I have a solid group of people who love me and accept me whether I’m having a 1/10 or 10/10 pain day.

Next up will be: “Letting Go: A Not-To-Do List for the Chronically Ill”

Thursday Tips & Tricks: Theracane 

This is the Theracane.

I bought it at the PT office I was going to for therapy appointments for my head/neck. Basically, this theracane mimics the massage techniques done by the physical therapists in order to restore muscle function; relieve tension, stiffness soreness, etc; and basically just help your body feel better!

For headaches: I use it on my neck, upper back and the spot right where the back of my head meets my neck. I apply pressure and try to relieve tension in those areas, because that kind of tension can worsen headaches and even cause headaches for some.
I’d definitely recommend buying one, especially because you can use it on so many areas of your body! 

What’s This Feeling I Feel?

Is it anger? Resentment? Envy?

Maybe a mixture of all three?

I don’t really have the right to feel any of them, honestly. I’m angry because it’s like I took three steps forward and ten steps backward. I’m filled with resentment because my peers are out drinking, socializing, and filling their lives with excitement on their days off, while I’m sitting inside brainstorming and researching ways to bring my pain down even just a notch. I envy people who can do things even as simple as sit around the dinner table with their families and only worry about when to get up for seconds in order to not miss out on the really good food everyone wants to devour.

I should replace my anger with disappointment, my resentment with understanding and my envy with good will. I just need to remind myself that I’m allowed to be disappointed and frustrated at my situation, but never angry. I can’t be angry because today I woke up, opened my eyes and kept on going. I can’t resent others for doing what I wish I could be. We were all given different battles to fight, and I have to understand that my battle is just different than my friends battles. I shouldn’t be envious, because I know I have good things in my life too. I should be happy that my friends are able to enjoy a life without constant physical pain. I never want to drag anyone and would never wish my situation upon even my worst enemy. I think it’s alright for me to be jealous every once in a while, because I’m only human. But I will try to push envy away from my side when I can.